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steroids.

In honor of world IBD day and in honor of my 28th trip around the sun today, I’m reposting one of my favorite posts about my IBD story. I will never forget how this disease makes me feel. I will never stop being grateful, and letting others know they aren’t alone.

Been doing a lot of listening to the Beatles and anything on the Beatles Pandora station lately.

Here Comes the Sun always brings me to tears. Good tears. Something about the smiles returning to the faces, it seems like years since they’ve been here. I can feel that. And it’s such a good feeling.

Man, this last month has been…not describable in one word. Not really describable in one post either, which is why I haven’t been sitting and writing lately. Shame, shame, for I really wish I would have documented more. But I remember. I remember sleeping, or trying to sleep sitting propped up on my mom’s couch with a million blankets, only to throw them all off of me to sprint to the bathroom 6-7 times a night. Laying there with my hands hovering over my stomach, praying and pleading with God to make the cramping pain just stop so I could sleep. I remember feeling such loss and loneliness every time my boyfriend would go home after coming to visit me, just wanting so badly to feel better and be there with him, helping him with the purchase of our new home and packing and moving and just wanting my life back.

Little darling, it’s been a long cold lonely winterLittle darling, it feels like years since it’s been here

I remember the look of exasperation on my mom’s face when I wasn’t getting better, and the look of love as she made all of my meals to try and get some nutrition in me, and her talking to me about how important it is to have faith, and God would get me through this, He would answer our prayers. I remember her sitting in the car and praying with me for good news before we went in to my colonoscopy. Praying for answers, for results, for improvements. I remember her telling me that I will get better. That I’m an overcomer. And telling me it’s okay to cry. It’s not a sign of weakness. It’s a sign of strength. I remember her packing my hospital bag, buying random items from the gift shop to make me smile, taking care of my dog and bringing me water or pedialyte or blankets whenever I needed it.

Here comes the sun, here comes the sunAnd I say it’s all right

I remember my dad sitting by my bedside in the atrociously uncomfortable hospital chairs. All day. Every day I was at the hospital that he could be there. Even when I was just sleeping. I remember how tired he looked. How he drove around aimlessly and prayed for answers, and pondered unanswerable questions with me. What causes this disease? Why do I have it? What are we going to do about it? When am I going to be better? How can we get other people to understand this? What’s the bigger meaning beyond this? I remember him going for walks with me down the hall, and joking with the nurses.

Little darling, the smiles returning to the facesLittle darling, it seems like years since it’s been here

I remember the nurses. The good ones mostly. But I also remember the one that blew up my vein when giving me a steroid infusion. And the one that said I was admitted for IBS. (IBS and IBD are two different ailments, one is a syndrome and one is a disease with no cure). I remember Jim, my favorite night nurse from my first hospital stay at the beginning of the month, making jokes and giving advice on how to talk to the doctors to make sure I was heard. I remember on my second hospital stay, him coming to tell me hospital ghost stories and making jokes while I was getting emotional from the steroids and just not having any answers or improvement. I remember my favorite day nurse Jannell with her poufy hair and outspoken voice, telling me that I was one of the sickest patients she’s ever had, calling me Jack and telling me stories. I remember waking up to her Sunday morning telling me I needed blood asap and we were going to be doing a blood transfusion today. I remember being scared and sad and she told me everything was going to be okay, that she would be here the whole time and that I had choices. That it was going to be a good thing and she would be there the whole time.

Here comes the sun, here comes the sunAnd I say it’s all right

I remember the changes in the medications. The discharges. The parasite. The antibiotics. The stomach acid burning. The we’re going to do remicade. The no we can’t do remicade until you’re stable. The phone calls from my doctors cell phone that I needed to make myself available to be admitted to the hospital. The colonoscopy that was useless because I was too inflamed. The TB test that was incomplete because I didn’t have a baseline to compare it to my immune system was so shot. The chest x ray. The blood draws. The IV team being called because I have terrible veins. Baby needles. Poke after poke after poke after poke. The waking up to check vitals. Low blood pressure, high heart rate, danger of organ failure. Blood loss. Cramping. Tears. Weight loss. Worry. Treatment plan change. New doctor. Infectious disease specialist. Lifelong medications. Steroid infusions. Steroid pills. Night sweats. Sharing a bathroom with other patients. Not making it to the bathroom on time. IV poles. Unable to stand in the shower on my own. Passing out while buying dog food. Collapsing on the stairs into the house when my legs gave out from under me. Shaking. Scared.

I remember the night my boyfriend came to visit me at my mom’s house in the evening. I remember when he looked me in the eye and told me “I need you to get better. Now. I miss you.” I remember his text messages telling me that he was always going to be here, that even though I am sick now, and not to undermine my illness, but this is part of life and we will get through it together. That he’s going to be there for me in the good times and the bad. That we’re a good team and when one of us needs the other one to be strong we balance each other out. I remember getting strength just from holding his hand. I remember just being held in his arms when I was able to move into our new home. Just being so grateful to have time together, to be able to have our new home, to relax and to heal and to make memories and be together. I remember sitting outside and crying just tears of joy at how lucky and blessed I am to be here and able to experience these moments of love and to just feel happiness.

Little darling, I feel that ice is slowly meltingLittle darling, it seems like years since it’s been clear

I remember the prayers. I remember my grandma coming to visit me at my mom’s house and crying on the couch with me. I remember her telling me that she does her walks in the basement and says her prayers. That she won’t stop, ever. I remember my aunts sending prayers and prayer chains and being on church lists. My grandma’s brother even did a whole sermon on me. I remember the novelas, my grandma praying every hour on the hour for my healing. Saying she won’t give up. I remember the prayers and visits and emails and texts from wonderful friends that I now consider family, bringing laughter and cheer and Golden Girls cards and books and magazines, and just checking in daily to see how I’m doing, sending pictures and memories past to bring smiles. I remember the encouragement from social networks, people I have never met before praying and sending kind thoughts and positive vibes. The power of prayers. And they were answered.

Here comes the sun, here comes the sunAnd I say it’s all rightHere comes the sun, here comes the sunIt’s all right, it’s all right

I remember getting discharged and my mom wheeling me out to the car to my waiting dog, and how he put his head right on my shoulder and just hugged me. I remember being weak and unable to walk through the grocery store, riding an amigo to get food. I remember sleeping and sleeping. I remember the first infusion. And the naps afterwards. And the feeling better the next day. Feeling stronger every single day. Doing a little more each day. I don’t want to forget it. I don’t want to lose sight of the beauty of this life. Because it is so beautiful. There is so much to be thankful for. I know that sick days can come again. I don’t have control over when this can happen. It’s not my plan, it’s His. But I do know that what I can do right now, is shine like the sun. And share love. And light. and hope with the rest of the world. Because it’s there. You just have to believe it.

For the May Cause Miracles that I am reading, day 18’s affirmation is I am thankful for my body. This was a challenge for me today.

Today marks one year since I have been diagnosed with ulcerative colitis. April 17th, 2013. And I’m worse than I have ever been. I’ve lost 7 pounds in the past few days. The pain is incredible. Eating is ridiculous. The steroid enemas are not working. I’m going to the bathroom 10-20 times a day. I had to leave work today after almost having an accident.

I spoke with my gastro doctor this morning. She said it’s time. We’ve tried everything to avoid the oral steroids. We tried the lialda, the canasa, the uceris, the steroid enemas and we tried it all again. I went gluten free, soy free, and tried to stay as stress free as possible. But is it hasn’t been enough. Something inside my body just isn’t connecting with the healthy me I want to be. So today, I started Prednisone. And I’m hoping that it works. This was not an easy decision. When I got the phone call this morning that the prescription was being filled, this needs to get under control and this is the next step, I was very upset. I immediately started crying, outside in the driveway while letting my dog out. I felt so defeated. And scared. I’ve worked so hard to get my hormones under control, and I’m in a good spot emotionally, and this could totally screw it up. I tried so hard to see some light, and I just couldn’t.

So I called my dad. I tried to keep it together but as soon as I told him I needed a pep talk I just started crying again. And we talked for a while. I calmed down, and he reminded me how strong I am and how I’ll be able to get through it. I’ve tried everything. And yet I’m still determined. Maybe I won’t get the side effects. If I do, I’ll be aware of it. I’ll know that I’m being crazy because the drugs are making me that way. One step at a time. One foot in front of the other. I really don’t care about the moonface or the weight gain or any of the temporary stuff. It’s the emotional theatrics that I’m scared of. So after I left work, I went and picked up the prescription. I cried again. All the way home. And then I got home and went to the bathroom and keeled over in pain. And the decision was made.

This is supposed to be such a happy time. My boyfriend and I are buying a house. I’m doing really well at my job. I have a great life. Except for this damn disease. And I’m not going to have that be a reason not to keep enjoying my life. I want to be out there.

And that’s the problem. I haven’t been able to enjoy myself the last few weeks. And I told myself that once the disease starts controlling my life and I can’t control it, I’ll go to the oral steroids. It’s time. I want to be able to hang out with my friends, happily. To go on road trips. To enjoy my summer. To work on our new house. To take my dog for walks. To do yoga. To be a good girlfriend, daughter, friend, person to myself. And I can’t do this when I’m stuck in the bathroom. Or laying on the couch. Or sleeping. I need to heal. And if this is what I have to do to get there, then I’m going to do it.

So, today I am thankful for my body. My body is a monster But it’s not an evil monster. It’s so strong, it kicks it’s own ass. It’s a ball of light that is meant to be shared with the world. It’s a vessel for healing, for sharing hope. For inspiring others. For living and loving and laughing and feeling the joys of life from the tips of my toes to the roots of my ever changing hair. It’s not for hiding away inside. It’s not for dwelling in pain. It’s not made to feel sorry for, not to deprive of joy. It’s made to nourish. To provide. To excel. My body provides a haven for my soul. It allows me to love, to feel, to cherish. It gives me opportunities for change. It challenges me. It is beautiful. And it deserves to be loved.

And love is what it’s going to get. So, today, one year after diagnosis. I begin the drug that I tried for the entire year to avoid. I talked to my boyfriend about it when he came home. I get concerned some days that maybe this is too much for him. That maybe this is going to be the straw that breaks the camels back. And then he says “Anytime I start to get bothered by it, I think about how its 100,000 times worse for you, and that’s enough for me to deal with it. You’re so strong. You need to take care of you. Don’t worry about anything else.”

And then I realize that these are the thoughts of my ego. It tries to convince me that I’m not worthy of love, that I’m too sick, too many problems, to much to handle. That I’m a hot mess. Well, ego. I’ve got news for you. Your time for making me feel unworthy and sick is over. This year, this year I’m going into remission. The steroids are going to work. And the Paleo diet is going to keep me there (I’ll touch on this later). I have the ability to heal. This isn’t saying it’s going to be easy. It might not be. But it’s time

I’m not going to stop fighting for my health and happiness. I have hope in my body and my ability to heal.

Aside from going on the spiritual diet of “May Cause Miracles,” I took it one step further and I started the SCD diet yesterday. Or at least I thought I did.

I bought the book “Recipes for the Specific Carbohydrate Diet.” (www.scdrecipe.com). Thinking I would give it a shot. So far, the steroid enemas are making little progress toward any remission status (and the side effects have been less than wonderful), so I figured looking at my diet (again) wouldn’t hurt. I’ve been gluten free since I was diagnosed and first went into remission by doing so. But once I stopped taking the canasa I immediately flared up again. That was in September and the bleeding hasn’t stopped since. I did an elimination diet and removed soy from my list of “legal” foods. Still no remission. Some days are better than others, but the urgency is still there and I still get nervous about accidents, and the good old friend blood shows up to say hello multiple times a day.

Anyway, I figured trying something else wouldn’t hurt. So I bought this cookbook at a used book sale and began reading. Essentially, my understanding of the SCD diet was like the title said “grain-free, lactose free, sugar free solution.” Sugar wasn’t something I paid close attention to, and rice and corn were something that I still allowed on my previous diet. I decided maybe eliminating those would help. So, I copied the list of legal and illegal foods in the cookbook and went to town meal planning. And I’ve stuck with those meals so far.

However, it has come to my attention that I’m doing it wrong. After a little further research at breakingtheviciouscycle.info and scdlifestyle.com and thegapsdiet.com, I learned that I should have done an introduction phase with bone broth and such first. I also found out that aloe vera gel was illegal, and that really seems to help soothe my inflamed tum. Ugh. I was frustrated.

I took a minute, closed my computer, and changed my steroid induced attitude. I decided not to be so hard on myself. I might not be doing exactly what the books say, but I’m making changes and trying. And if this doesn’t cure the flareup I’ll revisit and go to square one. If I get worse, I’ll go to eating just bone broth for 5 days if I have to. But I’m hoping to get better. Hoping that it helps stop the bleeding, and I get to feel satisfied and happy at the same time. Somehow, I’m going to beat this. I might not be doing it by the books, but I’m doing it this way for myself. Every one of us is unique, every one of us has their own needs and lifestyles, and everyone of us is important enough to feel good every day of their life. You decide what works best for you, I decide what works for me, and we all end up healthy and happy. This is me believing in miracles, maybe we can work it into a Disney song someday.

So, here’s the gist of what I’m doing. It’s a combo of Paleo, SCD, GAPS and what I know works for my body.

What I’m having:

Fresh chicken, turkey, beef, fish, lamb, shellfish.

Fresh spinach, onions, tomatoes and multiple other vegetables cooked really well or blended.

Processed meats, potatoes, yams, canned fruit, grain of any kind including corn rice and soy, milk, mozzarella and ricotta, ice cream, chocolate (sigh), coffee and beans. Pretty much any form of processed anything. Trying to keep it as whole and fresh as possible.

This morning I had a delicious green smoothie and my stomach didn’t bloat up like a 4 month along preggo. I ate leftover chicken with cheddar cheese and spinach (cooked really well). I drank a kombucha for afternoon snack and had mixed fruit of pineapple, strawberries and melon before that. This evening I ate boiled chicken with Greek spices and a cucumber and onion salad. It was delicious. I’m just about to settle in for some warm almond milk and banana sauteed with honey. This “dessert” might just satisfy my sweet tooth for the next few weeks.

How long will I continue this? Hoping til at least my birthday. Or when symptoms go away. Whatever comes first. My birthday is May 19th. Also happens to be World IBD day. Ironic? Perhaps. Reason to celebrate extra hard? Absolutely.

What dietary restrictions are you following? What have you had success/failure with?